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The United Leukodystrophy Foundation Inc

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Nonprofit Overview

Mission: The united leukodystrophy foundation is dedicated to helping children and adults who have leukodystrophy and assisting family members, professionals and support services that serve them. The ulf is committed to the identification, treatment and cure of all leukodystrophies through programs of education, advocacy, research and service.

Programs: The united leukodystrophy foundation serves in excess of 15,000 members, both families and professionals in all fifty states and over 50 foreign countries. Ulf maintains a 24-hour hotline to provide support, and offer advice on both medical aspects and how to cope. The ulf news, a quarterly newsletter provides timely, professional articles relating to the leukodystrophies. Over 300 people attend an annual conference allowing families and professionals to interact. Educational resources are provided on the leukodystrophies in the form of fact sheets on the disorders and an extensive library of video materials.

Community Stories

1 Story from Volunteers, Donors & Supporters

General Member of the Public

Rating: 1

This is a membership nonprofit which requires annual dues. This organization was sent a certified letter requesting a copy of the by-laws in order to discover how they add people to the Board of Directors. The certified letter was sent by a dues-paying member. The dues-paying member was completely ignored. The issue has to do with two organizations who both seemingly support CADASIL (a genetic disease) whereby a Board member of one is now on ULF's Board also, and who took a significant amount of money raised by members of the other organization for that organization and gave it to ULF. This gives the appearance of the commingling of funds. In addition, the other organization got address information from the ULF and gave it to the other organization when the other organization had been noticed in writing of the address to be used. Both these instances lead to the appearance of legal impropriety and possibly the misuse of public donations.

Ignoring a dues-paying member who sent a certified letter request for information relative to the organization does not appear seemly or appropriate at all.

Review from Guidestar